Rhys was only 12 weeks old when he was diagnosed with TSC. We were blissfully unaware of the chaos that was about to explode in our lives. As far as we knew Rhys was a healthy baby boy, and then at 12 weeks old he suffered a huge two hour seizure. Luckily, my eldest son Tyler had woken in the night which alerted me to check on Rhys who I found blue and unresponsive in his cot. By the time we arrived at the hospital he was hypothermic and barely breathing. It was the most frightening day of my life.
Tests were quickly carried out on Rhys, to determine the cause of this seizure and it quickly became apparent something serious was wrong. I will never forget feeling so vulnerable, alone and frightened when the doctors came into our cubicle to tell us the bad news. Rhys had tuberous sclerosis complex. I hadn’t even heard of this condition! I had so many questions but was so overwhelmed; I couldn’t even take in the answers. I will never forget that day for the rest of my life; our perfect little world fell to pieces.
Seven years later the battle against this cruel disease doesn’t get any easier. Rhys suffers severe epilepsy, development delays, autism, adhd and behaviour problems all at the hands of TSC. He also has tumours on his brain and kidneys and takes a cocktail of medications to try and ease his difficulties. Unfortunately, after trailing many different anti-epileptic drugs for Rhys, we have been unable to gain any form of control for his seizures. As a result he has had investigations for brain surgery to try and find a focal point for his seizures, in the hope that this could be removed. Sadly, after all these tests Rhys isn’t a candidate for brain surgery as his seizures have multiple focal points. This was obviously devastating news that once again, Rhys couldn’t be helped.
Rhys is currently on a clinical trail to help assess a new medication, with the hope it will be able to shrink his tumours and improve his epilepsy and overall quality of life. He is having to go on frequent visits to a hospital 3 hours away from us, which is sometimes on a weekly basis, having to endure blood tests which is extremely upsetting for him. Hopefully the results will be worthy of this commitment.
Rhys may have tuberous sclerosis, but tuberous sclerosis doesn’t have Rhys. He is a smiling, happy, courageous little boy and although TSC has such huge implications on his life, he doesn't let this phase him at all.